Let’s Talk About Your Girly Bits
Okay ladies, it’s time to talk about a subject that’s usually taboo: our girly parts and periods. Let’s talk about Endometriosis. You’ve probably heard of it. You probably know someone who has it. But what do you actually *know* about it?
What if you have it and you don’t even know it?
March is Endometriosis Awareness Month, and I’m trying my best to talk about a taboo subject and spread correct information about the disease. Because I’m MAD! I’m mad that there’s not a better diagnosis, a cure, and better information out there for women who have been living with this disease.
WHO HAS IT?
Endometriosis is found in 176 million women globally – 8.5 million in North America. Statistically, 1 in 10 women have endometriosis, and even more are suspected to be living with it undiagnosed!
If we look at my average RCM post stats, I have about 378 readers per post. Of those of you reading this post today, approximately 37 of you have been diagnosed with endometriosis. Of the rest of you, approximately 22 of you have been misdiagnosed or undiagnosed but are living with endometriosis everyday.
And that’s just you, my RCM readers.
When you apply those numbers to the general female population, it gets pretty scary! Also scary: It will take the average undiagnosed woman living with endometriosis 7-11 years to be diagnosed.
Endometriosis can affect any woman, at any age, of any race and in any socioeconomic situation. It’s also been found in men and children!
There are recent studies that show that sometimes it is gene-related. If you have female family members who have it, you’re more likely to have a gene that predisposed you to endometriosis. If you have freckled fair skin that burns easily and blue or green eyes, you’re more likely to be carrying this gene.
However I repeat: Endometriosis can affect any woman, at any age, of any race, and in any socioeconomic situation.
WHAT IS ENDOMETRIOSIS?
According to the Mayo Clinic, “Endometriosis is an often painful disorder in which tissue that is similar (BUT NOT THE SAME) as the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop.”
From the Endometriosis Research Center (the best info center on endometriosis, hands down):
CRIPPLING PERIOD PAIN IS NOT NORMAL! Our culture of menstrual misinformation and societal bias often tells us the following “taboo” symptoms are “part of life” because “we are female:”
- Pelvic pain that gets worse after sex or a pelvic exam
- Chronically heavy or long periods
- Bowel or urinary disorders associated with periods
- Painful sexual activity
- Significant lower back pain with menses
- Allergies, migraines or fatigue that tends to worsen around menses
- Crippling menstrual pain
We are often taught these symptoms are routine or that we shouldn’t talk about them. This is wrong. THESE ARE SIGNS OF ENDOMETRIOSIS.
I also want to add, that many of the women (research speculates up to 30%) who have severe endometriosis do not report crippling pelvic pain. I had the most severe stage of endometriosis – with a softball-sized endo tumor and a few other benign tumors scattered around – and was only mildly uncomfortable. However, I did have weird symptoms that caused me to go to from doctor to doctor for years, until my endometriosis was caught. I just knew deep down inside, something wasn’t right. And I was correct.
Some of my symptoms:
- Serious fatigue
- Inexplicable depression, anger, and anxiety that wasn’t better with antidepressants or antianxiety medication (think perma-PMS all day every day)
- Irritable bowel syndrome
- Exercise intolerance (I’d work out for a normal 45 minutes and be wiped out for days)
- Constantly falling sick to every little cold or virus that went around.
I had weird heavy hurty periods, but I had those since middle school, so that was normal for me. I just popped a few Ibuprofen and powered through. Turns out, the weird period stuff? Might have been endometriosis the entire time. Since I was in 7th grade. Take this seriously, folks. If not for you, then for your daughters.
HOW IS IT DIAGNOSED?
The “gold standard” of endometriosis diagnosis is laparoscopic surgery.
This disease affects HOW MANY WOMEN and the only way we can diagnose it is via surgery? Yes. Sometimes if you have an endometrioma (a tumor full of endometriosis) it will show up on a CAT Scan or an ultrasound. But most of the time it has to be diagnosed by color in comparison to the healthy pink surrounding tissue.
The average woman will suffer through years before being properly diagnosed. If I had been diagnosed years earlier there’s a chance we could have done something to halt its progress in my body. I might have had a chance to have a baby, or be a better mother to the child I do have. Instead for those years I was going from doctor to doctor, test to test, telling them “I know something is very very very wrong” and being gently told it was “all in my head”.
It took a way wacked-out blood test and a softball sized endometrioma to get anyone to take me seriously.
And that, ladies, is why we’re talking about this today. If I can get an earlier diagnosis and treatment for just one of you, my dear readers, then I will consider this article a success.
HOW IS IT TREATED?
There is no cure.
You will hear people spout off “cures”: hysterectomies, getting pregnant, hormone suppressants, menopause, and birth control are all popularly suggested treatments.
But they are just treatments… not a cure.
There is always a chance that the endometriosis will grow back.
Endometriosis sucks. That’s the bottom line.
WHAT CAN WE DO?
Talk about it
In 1982, Susan G. Komen passed away from breast cancer and her sister made a promise to end breast cancer forever. As a result of the Susan G. Komen fund and awareness campaign, more women are able to survive breast cancer, more women screen for it, there are better diagnostic tools, and the federal government spends $850 million each year in research, treatment, and prevention.
It’s hard to talk about our girly parts, but what if we did? What if we truly told all of our friends and family members about endometriosis and spread the word? When women started talking about breast cancer, the world obviously listened. Why not talk about endometriosis?
If someone had told me, “Hey, you might have endometriosis” maybe I could have mentioned it to one of my doctors. Maybe I could have found it earlier. If my doctors had more patients asking about it, maybe they would have been more informed about how to detect it.
If we spread facts instead of misinformation, maybe we could help other women who have be undiagnosed find answers. Maybe one of you reading this post has been living with some of the symptoms I described above, and are just dealing with it, just powering through. We tend to do that as women.
Don’t “deal with it” any longer. Ask questions. Get help.
Learn about it
Learn the symptoms. Tell your doctor. Tell your friends.
Below are several great websites that will help you learn more:
Quick informative video: You Can Fight Endometriosis
Endometriosis from Endometriosis.org on Vimeo.
If you have a great doctor treating your endometriosis, tell others. Good endometriosis doctors are hard to find. I had to go through several and it was only by word of mouth from other “endosisters” that I found my current doctor in Birmingham.
Volunteer for studies
One of the best ways that medicine can learn more about this disease is by studying those of us who currently have endometriosis.
I have already participated in a study that is working to identify the gene that causes endometriosis, and another that looks at a connection between joint flexibility and endometriosis. There are a bunch of other studies out there too. For most of them you do need an active surgical diagnosis of endometriosis.
Try some of these:
www.endtoendo.com (the DNA/gene research study)
www.violetpetalstudy.com (studying investigational pain medicine on endometriosis patients)
www.healthcentral.com (a list of active studies, vetted by Clinical Research Corner)
There’s even more out there. But if you’re wandering around the Internet looking for research studies, make sure that they’re legit before you participate.
- Crippling pelvic pain is never normal.
- Feeling like something is “definitely wrong” is never normal.
- Endometriosis can affect any woman at any time in her reproductive life.
- While there is not absolute cure, there are ways to control the disease and treat the symptoms.
- Science is constantly learning more about this disease.
- While it is painful, it is not hopeless!
So tell a friend, a sister, a family member about endometriosis. Let’s talk about the taboo.
Lexie Robinson Austin is one of the few born and raised Huntsville natives. She is a stepmom to one, a librarian to many, a reader of books, and baker of cookies. She likes ridiculously impractical shoes and the color pink.
Very informative and well-written post, Lexie! I’ve got some family members who suffer from endometriosis. And unfortunately, I think we ‘ve all grown up thinking that having endometriosis or fibroids was just a part of our family history. And likely, it is, but not in a good way. Thanks for bringing attention to this disease. It reminds me that I’ll need to be even more vigilant about my daughter’s medical care as well as mine. And I will indeed be spreading the word!
Thanks Taralyn! It’s always hard to talk about private health stuff, but I find that it is SO important to spread awareness, and for those of us who do struggle with it, it’s a great reminder that we’re not alone. I appreciate your support 🙂
Your experience mirrors my own. After years of not being taken seriously it was nice to finally find out I was not crazy. Its amazing how uninformed the dr’s in our area are, I was told to go home and take advil and come back in a month by one. Like you, I too found an incredible dr in Birmingham who has made a huge difference in my journey with stage IV endo. Thanks for sharing our silent struggle, and here’s to hope it will help others going through this. P.S. where did you get your shirt?? I need one!
Amanda, re: uninformed doctors- I KNOW!! Oh my goodness, I know. I tried very hard not to bash any doctors here in HSV as there were things that I was told during my diagnosis that I now know were completely false. The misinformation about this disease that is out there not only in the general population but also in the medical community is unreal. It’s why we’ve got to stay up to date and informed on our condition! I got my shirt at Cafe Press- they’ve got a ton of awesome Endo Awareness stuff! You can find it at https://www.cafepress.com/mf/51937343/fight-like-a-girl-endometriosis_tshirt?productId=514086648
Thank you for this article! I’ve had endo for 15 years now and wasn’t diagnosed until I was almost 30, 4 years ago. It is awful to not be taken seriously about the pain you are in. My doctor has agreed to a hysterectomy but I’m not sure I want to go that route. I guess time will tell. I’m going to check out the links in the article and see what other options I may have. I’m hoping I don’t pass this on to my daughter!
Hi Crystal! As someone who has been through a hysterectomy in her early 30s, I definitely recommend that you get a second and even third opinion on your case. Also make sure that you scout out a specialist, as endometriosis can reoccur after a hysterectomy if the surgeon does not remove all of the endo lesions. The biggest contributing factor to reoccurrence of endo post surgery is the skill of the surgeon, so find a good one! Good luck and I hope you feel better soon!
My 15 year old daughter was recently diagnosed with endometriosis after suffering for 2 years. She saw doctors here in Huntsville and even Vanderbilt. After her pediatrician sent us to the Huntsvile ER twice in one week, the ER doctor said THE TERM, endometriosis. That eventually led us to a specialist in Birmingham, Dr Bates last month. I have been on-line and read about diets and/or foods that ease symptoms for those suffering from endometriosis. What is your opinion?
First of all, it hurts my heart to hear of your daughters condition. Many of the “endosisters” I know are older, in their 20-30s, so it’s a relief when they reach their diagnosis after years of doctor hopping and hurting. However, to hear of someone so young with so much life before them getting this diagnosis….and knowing the path she will have to walk….my heart hurts for her and your family. It makes me very glad people are talking about endometriosis. So that people will be more aware. So that there will be better research. So that one day, maybe in your daughters’ life time, there will be a cure.
Regarding diets, there is some pretty good factual evidence that eliminating specific foods can help alleviate some of the symptoms of endometriosis. If you ever want to research, search the National Library of Medicine’s PubMed database https://www.ncbi.nlm.nih.gov/pubmed/ They have results from all kinds of diet studies, as well as one really promising study on going gluten free. https://www.ncbi.nlm.nih.gov/pubmed/?term=gluten+free+endometriosis
The standard Endo diet is no meat, no sugar, no gluten. Basically, it’s an anti-inflammatory diet, because some of the major pain that happens with endo is from inflammation. However, I find no meat-sugar-gluten a little unrealistic for me and my life. After all, I have to have my chocolate! So I’ve found a balance that seems to work for me. I go completely gluten free, 90% meat free, and try to be low sugar. Basically, your daughter is going to have to be very good at listening to her body to identify things that make her feel better and worse. I would recommend a “whole foods” type diet, as processed/highly chemical food also tends to make me worse. Also, try to stay with hormone free food as much as possible, especially with your eggs, milk, and any meat. She’s going to have so many wacky hormones floating around from the endo, she doesn’t need any more added to the mix. And finally, make sure she’s on a good multivitamin as us “endo-angels” tend to become a little deficient in certain vitamins and minerals, like iron. It will also help her immune system- because endo plays havoc with that as well.
Finally, you’ve definitely done the right thing in seeing a specialist. So much of the recovery and remission of this disease depends on the information level of the doctors and surgeons who are working on us. And with someone so young, again, very very smart to find a good doctor.
I wish you and your daughter the very best. And while she does have a long road ahead of her, she’s not alone and it’s not hopeless. She’s going to have other endosisters cheering her on, and science is constantly finding out new information about this disease. Definitely check out the online resources I mentioned above, especially the Endometriosis Research Center. Good luck to your family!
Thanks for the feedback! I think our whole family will take make this anti-inflammatory diet change a lifestyle change…..oh but it won’t be easy!
Lexie Robinson, thanks for writing this highly informative article on Endometriosis! The article is enlightening and useful not only for women, but for men also who can inform their dear ones of symptoms, diagnosis, and treatment of Endometriosis.
Thanks for your comment. I’m so glad that you were able to find this article helpful! Have a great day!
Hi there, I’m Lindsey! I have a question and would love to speak with you. Please email me when you have a chance, thanks so much!! lindsey(dot)caldwell(at)recallcenter(dot)com
Hi Lindsey! I’m just now seeing this comment. I’ll shoot you an email today!
Hi Lexie! I’m new to the area from Ohio (NOT a Buckeye fan!) and have terrible endo. May I ask, who did you go to in Birmigham? It took me a long time to figure out what was wrong with me (I’m 41) and had a complete hysterectomy one year ago. They said the endometriosos “just poured” out of me when they cut me open! I’m in horrible pain again and I just know it is back. I’m trying to stay out of the ER and I do have a PCP in Decatur but would love to avoid the middle man, if you know what I mean.
If you can at all make it happen, head to the Center for Endometriosis Care in Atlanta. I loved my doctor in Birmingham, but in the end she was just as ill prepared to deal with endo as any other doctors were. I needed a specialist and so she referred me to the CEC. I went for a week this summer, had surgery while I was there and it has improved my quality of life about 85%! Like you I was post hysterectomy and having SERIOUS pain. The good news is that once you go see a specialist like Dr. Sinervo at the CEC, and they treat it via excision surgery, you’re done. They get it all, you don’t ever have to see them again! Which is why the drive to Atlanta is worth it. I still have leftover pain, but it’s post-surgical adhesions. Check the CEC out at centerforendo.com and let me know if you have any questions!